Find out about Post-Polio Network NSW aussie flag
Selection
View NowPolio Particles - # 1
View NowPolio Particles - # 2
View NowPolio Particles - # 3
View NowPolio Particles - # 4
View NowPolio Particles - # 5
View NowPolio Particles - # 6
View NowPolio Particles - # 7
View NowPolio Particles - # 8
View NowPolio Particles - # 9
View NowPolio Particles - # 10
View NowPolio Particles - # 11

 

Polio Particles - Issue 2

Mary Westbrook

This issue of Polio Particles was first published in Post-Polio Network (NSW) Inc Newsletter Issue 44, February 2000. Reprint requests should be forwarded to Mary by email at AskMary@post-polionetwork.org.au

A Polio By Any Other Name

One of the aims of the disability rights movement has been to do away with disabling language. A common example of such language is describing a person as if they are their disability eg when nurses refer to the gall bladder in the bed near the window and the fractured femur by the door. In many health professions' journals it is now mandatory to refer to "people with arthritis" etc rather than to arthritics. Yet many people who had (or I sometimes wonder if it is more accurate to say have?) polio still like to refer to themselves as polios. In the March/April 1999 issue of the American magazine Disability Rag Sally Rosenthal (who is not a polio) wrote, "While I generally dislike describing oneself in terms of a disability, I have come to see the absolute relevance of it in relationship to polio. The social phenomenon of the experience really does shape and define this subculture. People who call themselves 'polios' are I think, reflecting pride, like Vietnam vets do, in having been through a type of battle that will never occur again in this country. People who use it want to be remembered as its veterans."

(Ed. This helps explain why our Network polio virus badges are selling like hotcakes. The badges feature a striking four-colour design and are still available at $5 each plus $1 postage - order yours today!)

Polio Stories for Grandchildren

Recently the Network received a request from a woman whose mother who had been a Network member prior to her death. The daughter was attempting to write a family history for her own children but was hampered by her lack of knowledge of her mother's experiences with polio. The mother would rarely speak about it. The daughter believes her mother's reticence was caused by her shame at having a disability whereas she considers that her mother's story would be a source of pride and inspiration for her grandchildren. We were able to put her in touch with four Network members who contracted polio about the same time as her mother, in 1916, and who were pleased to share their memories. A good way to open the way to talking about polio to children is via other people's published stories. One such book, for children aged around 9-12, is Small Steps: The Year I Got Polio by Peg Kehret (published by Albert Whiteman & Co, Illinois, 1996). Kehret, award-winning author of many children's books, writes about her hospitalisation with a severe attack of polio when she was 12 years old. She describes the isolation ward, her treatment, and her eventual return to school using walking sticks. A final chapter tells what happened to the children in her ward and her realisation 40 years later that, "the enemy was not vanquished but had merely gone under cover, waiting to strike once more. My battle with polio is not yet over. When my doctor recommended physical therapy, I burst out laughing. Here it comes, I thought. The Return of Torture Time."

In the prologue Kehret writes that her hospitalisation with polio, "more than any other time of my life molded my personality". Her story may differ from yours but that makes a good casting off point for talking to the grandkids. I have seen Kehret's book at the Feminist Bookshop at Lilyfield. It is also available from Internet bookstores. For example, www.amazon.com has the book in hardback for $US10.47 and paperback for $US4.76 plus packaging. You can pay by Visa, Diners Card or American Express).

What Other Polios Think

An interesting Internet site (http://www.skally.net/ppsc/) is Post Polio Central. You can have your say in a bi-weekly poll and read the results of previous polls, which were completed by the 200 or so polio survivors who visited the site that fortnight. The diversity of survivors' experiences is revealed in answers to questions, some of which are shown below.

  • Do you feel that the emotional toll that the original polio took is: Less than the physical toll (45.5% agreed), greater than the physical toll (30.3%) or equal to the physical toll (24.1%)?
  • Do you think, in general, medical professionals understand PPS? No (53.6%), very little (25.7%), somewhat (17.5%), yes (3%).
  • Has increased disability put a strain on any of your relationships? Yes, some (50%), yes, a great deal (30.2%), no (11.6%), yes, very little (8.1%).
  • If you knew soon after recovering from polio what you do now about PPS would you have lived your life the same (48.6%), have done less (27%) or done more (24.3%)?
  • Has an understanding of PPS and its causes led you to modify your way of living? Yes and the changes have helped my symptoms (71.6%), yes and the changes have not helped my symptoms (23.4%), no (4.9%).
  • What is the primary challenge, for you, of living with PPS? New and/or increasing physical limitations (35.5%), fatigue (17.7%), pain (11.8%), fear/anxiety (4.2%), depression (2.5%), none of the above (3.3%), all of the above (21.1%).

A Paralyzing Fear: The Book

For those who missed the film or enjoyed the film but want more details of the story (including the late effects of polio) the book by Nina Gilden Seavey, Jane Smith and Paul Wagner was published by TVBooks, New York in 1998. It is 288 pages in length and contains over 240 pictures. You can purchase it from the Internet bookstore www.amazon.com for $US22.46 (about $A35) plus postage or you can request your local library to purchase a copy. The video is available for about $90 but I found the book more informative and satisfying.

How Polio Vaccines Work

The Network receives many queries from members and from people in other countries who e-mail our Internet site (www.post-polionetwork.org.au). A recent question asked, "Regarding polio immunisation, do the antibodies formed remain for life or for a period of time, and can they be identified in the lab?" We asked Dr Marcia Falconer, a biologist in Ottawa, for an answer. Dr Falconer has conducted extensive research in virology and molecular biology and has published several papers on the late effects of polio. Dr Falconer is a polio survivor and as she visits family in Sydney we are hoping she will present a seminar for the Network in the future. This was her answer to the query on vaccines:

There are two types of polio vaccine, live vaccine and killed vaccine. The easiest to understand is the Salk, or killed vaccine. In it, the three types of polio virus strains, pv1, pv2 and pv3 are killed by exposure to a chemical, usually glutaraldehyde. This completely inactivates the virus so that it cannot infect cells. However when it is given, usually as an injection, the cells of the immune system in the body recognise the dead virus as an "invader" and form antibodies. They will form antibodies to all three types of virus since the virus strains have slightly different shapes and the antibodies react to this shape to produce different antibodies. The body will produce antibodies to all three types, but it will not produce equal amounts of antibodies to each. Usually it produces higher antibody levels to types 1 and 2 and lower levels to type 3. This probably has to do with the actual shape of the virus (the antigen). However, the levels produced are sufficient that any subsequent infection with live virus of any, or all, of the three polio virus strains will be held in check and the person will not go on to develop paralytic polio.

The Sabin, or live vaccine, is quite different. Researchers spent many years finding a variety of each strain of poliovirus, pv1, pv2 and pv3, that would not attack the nervous system. These are called "attenuated" viruses. It means that, theoretically, a person can be infected with these attenuated viruses and they will not develop acute polio, but they will produce antibodies to these viruses and the antibodies will be effective in preventing any subsequent infection by the "real" (not attenuated) polio virus strains. That is the theory. What happens is this… A person is given the "live" (attenuated) vaccine by mouth. Usually the vaccine is dropped onto a sugar cube and this is eaten. The three attenuated strains go through the stomach into the digestive system where the virus can attach to certain cells of the intestine. This is the route of infection for real or "wild type" polio virus (the unattenuated, naturally occurring polio virus strains). However, once the virus in the vaccine enters into the blood stream, it stops there. It will not enter the nerves. Instead the immune system kicks in and makes antibodies, which destroy these viruses. These antibodies remain, at some level, in the blood and will protect the person from a later infection with the real, wild-type polio virus.

With both vaccines, the level of antibodies produced varies from person to person. The antibodies, and the capability to make MORE identical antibodies, remains with the person, usually for life. Thus they say that the oral, or "live" or Sabin vaccine will confer life long immunity to polio. However, in some very small number of people, the live, attenuated virus that is used in the Sabin vaccine to produce antibodies, will mutate. These mutated viruses are capable of both reproducing themselves (eg infecting other cells) AND are capable of attacking the nerve cells. In some people their bodies have already begun producing antibodies and so the mutated viruses don't survive long enough to do any damage to the nerves. However there will still be live viruses, infective ones capable of causing paralysis in a susceptible person, which are shed in the faeces. Thus an infant may not come down with acute polio but will shed wild-type, infectious polio virus in the faeces and parents or others who diaper the child are then at risk, if they haven't been immunised, of getting paralytic polio. In some unfortunate cases, the mutation occurs very early, shortly after the vaccine was ingested. The body does not have time to make antibodies and so the virus gets a foothold and the result is vaccine-caused paralytic polio.

There is, however, a perfectly safe way to immunise people, one that protects both the child and the parents. You first give the child injections of the killed, Salk, vaccine. After the child has produced antibodies, usually 6 months or so later, you then administer the live, Sabin, vaccine. When you give the first shots, you must also ascertain that everyone around the child has up to date immunisations - or give them shots as well. The administration of the dead vaccine produces sufficient immunity so that when you give the "live" vaccine later on, the antibodies are already present. The reason for giving both types, sequentially, is to prevent vaccine-caused polio. You could give only the shots of the "dead" vaccine, but this usually doesn't confer life-long immunity and regular booster shots are required. The live vaccine, does, normally, give sufficient immunity to protect you from polio for the rest of your life.

Ed. Currently, Australia's immunisation schedule recommends the Sabin vaccine except for immunocompromised persons. Readers may be interested to know the situation in the USA where The Center for Disease Control and Prevention's Morbidity and Mortality Weekly Report, 1999, 48, 12-16 advises in part: As a result of progress in the global eradication of poliomyelitis, the need for further reductions in the risk for acquiring vaccine-associated paralytic polio, and the acceptance of inactivated poliovirus vaccine (IPV) by parents and physicians, the Advisory Committee on Immunisation Practices (ACIP), the American Academy of Family Physicians (AAFP), and the American Academy of Pediatrics (AAP) recommend IPV for the first two doses of poliovirus vaccine for routine childhood vaccination. The ACIP continues to recommend a sequential schedule of two doses of IPV administered at ages 2 and 4 months, followed by two doses of oral poliovirus vaccine (OPV) at ages 12-18 months and 4-6 years. The administration of IPV for all four poliovirus vaccine doses also is acceptable and is recommended for immunocompromised persons and their household contacts. OPV is no longer recommended for the first two doses of the schedule and is acceptable only for special circumstances (e.g., vaccination of children whose parents do not accept the recommended sequential schedule, late initiation of vaccination that would require an unacceptable number of injections, and imminent travel to countries where polio is endemic.) OPV remains the vaccine of choice for mass vaccination campaigns to control outbreaks of wild poliovirus.


Contact Info Know More? Membership Form Main Page